Making it count

Friday May 4th 2018 is a night I’d like to never remember. Instead, I have permanent memories I can't erase, as that was the night I watched my brother have a seizure at the end of his first charity fight night, as he returned to his corner. He suffered a subdural hematoma, a life threatening shift of his brain due to swelling and bleeding. Talking on the phone to the paramedics, while his wife was on the floor next to the doctors trying to keep him alive, was the scariest moment of my life.

Lars' craniotomy scar is the only outward sign remaining, yet recovery from a TBI is hidden and ongoing. Photo: J Oxenham for NZ Herald.

Or maybe it was when we were at the hospital being told he needed an emergency craniotomy, where they would remove some of his skull, stop the bleeding and reattach the skull, a high risk procedure. All of my families’ lives changed in that hour, but for my brother Lars, his wife Louise and 5 month old daughter Elle, their lives changed forever.

We are all incredibly fortunate that Lars’ recovery to that traumatic brain injury (TBI) has truly been miraculous. We’ve been told that many times. What we didn’t have any comprehension of at the time, is the long and challenging journey that lay ahead for Lars and his family. He spent 6 weeks in hospital and ABI rehabilitation. Once he returned home he continued with physio, speech and language therapists, occupational therapists, psychologists and specialists.

Lars is the Managing Director of our business Tredsafe, and I remember after we knew that Lars was going to be ok, there were discussions for how to support the business in this period. We thought maybe it would be 2-3 months off work. We had no idea that recovery from a TBI must be gradual, follows no ‘set’ plan and takes two years to reach maximum recovery - a full recovery is unknown.

Lars has been on a return to work programme this year and 16 months on, he is currently up to 30 hours per week, starting to travel within New Zealand (previously frequently travelling internationally). Again, his recovery has been absolutely remarkable, but it started with one hour in a week at work, causing immense fatigue.

Fatigue has been the biggest challenge he has continued to face. Noise, distractions, complex discussions or problem solving being the biggest challenge. This is counter to his prior approach to life of ‘pushing through’ limits (as you do when you compete in Ironman) but it’s important to take things slowly otherwise you set yourself back significantly.

Traumatic Brain Injury is a difficult injury to live with and it’s considered a ‘hidden injury’. You can’t visibly understand the challenges that the person is coping with and there are so many varying effects due to the complexity of the brain. Enduring symptoms need to be managed for life.

Something else I didn’t know before, is that most head injuries actually happen around the home and can happen to anyone. In New Zealand, 100 people a day have some form of head injury and 70% are considered traumatic brain injury. TBI is the leading cause of long-term disability in children and young adults worldwide and it has serious effects on the lives of patients, the families and friends and society. The Lancet Neurol reports that projections indicate that TBI will become the third largest cause of global disease burden by 2020.

So, after being given that kind of reminder about how precious life is and how quickly it can be changed, or gone, I’m determined to try and live my life with intent and make it count as much as possible.

My brother and I had always dreamed of doing the New York marathon together, and of doing something one day that raised money for a charity we cared about. So, this year we are checking that off the bucket list and running on November 3rd in the NYC marathon to raise funds for Brain Injury Association Auckland and the fantastic work that they do with Headway to support those suffering from brain injuries and their families. We have a Give A Little page and if you felt like contributing it would be greatly appreciated.

On top of raising funds, we wanted to raise awareness for what TBI and recovery looked like so that others can be more informed. This is why I’m putting this article out here, and why I’m immensely proud that my brother, and his wife, shared their story with the NZ Herald this past weekend.

We are also sharing our story around the New York marathon on our Instagram page - @Jacobsen_Run_For_Recovery. Please follow our progress!

I ultimately hope this has lifted the lid on TBI and recovery for some of you reading.

Renee Woolcott, Impact & Innovation at Jacobsen Holdings | Change agent for good